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Carly's Voice: Breaking Through Autism

Carly's Voice: Breaking Through Autism

4.7 36
by Arthur Fleischmann

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The extraordinary and moving story of Carly Fleischmann, a teenager with severe autism who, through technology and today’s social networks, has become a passionate advocate for kids everywhere.At the age of two, Carly Fleischmann was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted that she


The extraordinary and moving story of Carly Fleischmann, a teenager with severe autism who, through technology and today’s social networks, has become a passionate advocate for kids everywhere.At the age of two, Carly Fleischmann was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted that she could never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioral and communication therapy, Carly remained largely unreachable. Then, at age ten, Carly had a breakthrough. While sitting in her kitchen with her devoted therapist Howie, Carly reached over to the laptop and typed “MEAN,” referring to Howie’s efforts to get her to do her work for the day. She then went on to further explain her recalcitrant mood by typing “TEETH HURT,” much to Howie’s astonishment.

This was the beginning of Carly’s journey toward self-realization. Although Carly still struggles with all the symptoms of autism, which she describes with uncanny accuracy and detail, she now has regular, witty, and profound conversations on the computer with her family, her therapists, and many thousands of people who follow her via her blog, Facebook, and Twitter. A 2009 segment on 20/20 brought her story to national attention, and she has since appeared on television with Larry King, Ellen DeGeneres, and Holly Robinson Peete, all of whom have developed warm relationships with her.

In Carly's Voice, her father, Arthur Fleischmann, blends Carly’s own words with his story of getting to know his remarkable daughter. One of the first books to explore firsthand the challenges of living with autism, it brings readers inside a once-secret world in the company of an inspiring young woman who has found her voice and her mission.

Editorial Reviews

Publishers Weekly
In this unsparing but affecting account of remarkable Toronto teenager Carly Fleischmann, it’s clear that while most people take the ability to communicate for granted, for Fleischmann it defines her daily struggles and miraculous successes. Early on, Carly, a twin, is lagging behind her sister, neither talking nor crawling. She is diagnosed as pervasively developmentally delayed, a spectrum of disorders that includes autism. Her doctors believe she will always be below average intellectually and eventually need a group home. For the family, this begins a decade of chaos: endless physical and speech therapy, battles with the government over health coverage, and untenable exhaustion as they try to make sense of a condition that has no cure and keep the rest of the family from fracturing irreparably. Of this time of hopelessness her father writes, “his was not a life but a slow demise.” After years of silence, a transformative moment occurs when Carly expresses herself by typing on her voice-output device for the first time. Finally they are getting to know her. “I felt like we were discovering the lost city of Angkor,” her father writes. Although Carly’s typing is sporadic at times and her uncontrollable impulses, OCD, and insomnia are ever present, the world has opened up for her. In this inspiring story, Carly has a bat mitzvah, starts attending mainstream gifted classes, and has become an autism spokesperson. Agent, Linda Loewenthal at David Black Literary Agency. (Mar.)
Library Journal
Diagnosed with severe autism at age two, Carly Fleischmann was nonverbal despite hours of intensive speech and behavioral therapy. At ten, she had a breakthrough: she was able to type words to communicate with those around her. Now, at 16, Carly also communicates through social networking sites and a blog. She has become a spokesperson for herself and other nonspeaking individuals and brings a wealth of insight and perspective to what it is like to have autism. Carly's father, Arthur Fleischmann, tells the family's story with input from Carly herself. VERDICT A well-written story of one family's struggle, perseverance, and triumph in helping a child with autism find her voice. This book will benefit people with autism, their families, and all who interact with them.—Lisa M. Jordan, Johnson Cty. Lib., KS
Kirkus Reviews
The anarchy of lives dictated by autism, for both the autistic person and the immediate family, rawly detailed by one such parent. The first pages of this memoir/biography might have you convinced that Fleischmann has little more than a threnody to offer regarding life with his daughter Carly, who has severe autism and oral apraxia: "She made odd movements and sounds and covered her ears when it was noisy. She cried often. And she never, ever stopped moving. Never." Through a series of never-ending downbeats ("Always the incessant rocking. The rocking became the manifestation of everything I hated about Carly's condition"), coupled with his wife's diagnosis of lymphoma ("I was beginning to feel like Haiti. Or Sri Lanka. A place where natural disasters just start coming and don't have the good sense to stop"), readers can't help but sympathize with the author and his family. Fleischmann displays brutal, disarming honesty, though toward the beginning of the book some readers may wonder when enough is enough. But then something happens, and it becomes clear that the author has been quietly setting the stage all along: introducing Carly's teachers, explaining the applied behavioral analysis technique they use with her, touching on every step forward and all the steps back. One day Carly started to communicate through her computer--haltingly but intelligibly--and her parents learned that she was not as oblivious as they thought when they were speaking rather frankly in front of her. To read along as she expresses her feelings in conversations with her father is almost as stunning as when she writes of life inside her autistic head: "It's like being in a room with the stereo on full blast. It feels like my legs are on fire and over a million ants are climbing up my arms." Is it any wonder she still has behavioral outbursts? Both heart-wrenching and deeply inspiring. Imagine communicating with your daughter for the first time--at 10 years old: "I could be more than a caregiver: I could actually be her father."
From the Publisher
"Carly's Voice makes it very clear that a non-verbal person with autism has a rich inner life. Typing independently enabled Carly to express wit, explain her sensory problems, and show that a good mind has been freed." ---Temple Grandin
Temple Grandin
"Carly's Voice makes it very clear that a non-verbal person with autism has a rich inner life. Typing independently enabled Carly to express wit, explain her sensory problems, and show that a good mind has been freed."
Holly Robinson Peete
"I have learned more from Carly about autism than any doctor or 'expert,' and she has helped me understand and connect with my son in ways I couldn't have imagined. Her book takes the autism conversation to new places and disproves the ridiculous notion that non-verbal people with autism don't have feelings and thoughts or are unintelligent. Carly is—for me—autism's fiercest and most valuable advocate."
Richard M. Cohen
“Carly's Voice is the wishful slogan of a movement. Autism has spoken, and a new day has dawned. Carly's story is a triumph.”
“Throughout Arthur Fleischmann’s exceptional memoir about his and wife Tammy’s experience raising a child with severe autism, it is the plaintive “voice” of the wordless-from-birth Carly that resonates. . . . It is Carly’s chapter, written in her words, and her charm that set this memoir apart.”
“[Carly’s] explanation of what it feels like—emotionally and physically—to have autism is eye-opening. Quite frankly, I think [her] chapter should be required reading for our society, especially as we head into Autism Awareness Month.”
New York Journal of Books
“Witty, sarcastic, and heartfelt, Carly’s words shine with personality and intellect, her strength and determination adding sparkle and hope.”
Booklist (starred review)
“Throughout Arthur Fleischmann’s exceptional memoir about his and wife Tammy’s experience raising a child with severe autism, it is the plaintive “voice” of the wordless-from-birth Carly that resonates. . . . It is Carly’s chapter, written in her words, and her charm that set this memoir apart.”

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Communication was a big goal of mine, but at the same time it was a big goal for everyone around me. Barb, my speech pathologist, was working on many ways for me to communicate ever since I could remember. I recall having popsicle sticks jammed in my mouth and being taught how to use my hands and fingers to do signs for sign language. It was always hard and, to tell you the truth, frustrating at times. I can almost picture the first time I was introduced to using picture symbols. I remember thinking, Wow, I point to a picture of chips and someone just hands it to me. That, to me, was amazing. I took a while to get the hang of it. At first I found it was hard to stop my impulses to pick other picture symbols that weren't the ones I needed at the time. For example, I would want to tell someone that I needed the washroom, but the chip picture always looked too inviting to ignore.

As the years went on I was introduced to Howie, who would become an important person to Barb and me. I think Howie, like Barb, always believed I had something important to say and wanted me to find a way to get it out. Howie and Barb would always come up with neat ideas for me to communicate. One of the things they came up with was a big binder that they made me carry around my house and school that had picture symbols all throughout the pages. The picture symbols didn't only have pictures on them, they had words streamed across the top. Those words would lead me to spelling, but that's for another paragraph.

I recall Howie asking Barb in my classroom what was the ultimate goal for me to communicate? Barb turned her head at me and then back at Howie. She began to say, "Carly is six and for now, I think we need to focus on picture symbols because I think the long-term goal is to have Carly use a voice output device."

Howie had only worked with me for a couple months at this point and I think he wasn't too sure of me, at first, but when Barb mentioned a voice output device, something must have clicked in Howie's head. That day, and for the next weeks and months, Howie pushed picture symbols over and over again. I was always good at identifying pictures, but because I wasn't fully able to audio filter, I didn't always understand the full label for the picture.

The way I understand it is, my mind works differently than most people's. When I see something, I take a picture of it and it stays in my head. This is why I have trouble looking at people's faces. When I look at someone I take over a thousand images of that person's face in less than a minute. Now think of my brain as a digital camera. The more I look at someone's face, the more pictures I take. Because I take so many pictures, my brain or, as in my example, the camera gets full. I am no longer able to process the pictures or images and I am forced to turn away.

Because of my ability to take pictures of people, objects, and images, the picture symbols Howie introduced every day stuck in my head. My progress was not slow but not fast. However, midway through the school year, Howie convinced Barb and the school board that I was ready for a voice output device. I think the day I got my voice output device was a big moment in my life, and I did realize how much work and effort I was going to have to bring to the table. Using ABA, Howie and Barb worked on their own program to teach me how to master the voice output device. From day one, Barb and Howie would only hold my hand to teach me where the symbols were. Once I learned the location of the symbols, Barb made sure no one would help or assist me when I used my voice output device. Barb and Howie wanted people who were around me to know and to see that I was able to do this all on my own.

My first voice output device was big and only let me use eight symbols at a time. Howie made a book with over a hundred symbols and categorized them to put on the voice output device when I would be in different situations. Wow, to think about it, Howie had no life. Just joking. He had a girlfriend at the time, who he later married.

A little bit after I got my first voice output device, I was already growing out of it. My parents, with the guidance of Barb and Howie, ended up getting me a computerized voice output device (Called a DynaWriter), which changed my life. The voice output device had words scrolling at the top of the symbols. My photographic memory started taking in those images/words.

I find it weird, but I have never been asked what was going through my head the first time I spelled. The truth is I was feeling sick the first time I spelled. Howie pulled me over to Barb and I just felt achy all over. I remember thinking I didn't want to use my voice output device, so why are they making me? I knew Howie wasn't going to let me go without getting me to say something. I just wanted them to know I was not in a good place and then, in my head, I saw the word help, a word that had been on the main page of all my voice output devices since the beginning. I started to spell it H E L P. I then pulled away to lie back on the couch when Howie pulled me back. I think they were shocked and I, well, I didn't really process my accomplishment yet. I felt really nauseated and threw up a little in my mouth when Howie pulled me back to spell. I was placed in front of the voice output device again and, well, you know, I wrote teeth. In my head, I was just trying to think of a word that would describe what just happened in my mouth. In hindsight, I should have written the word mouth, but I was just a kid.

I didn't fully understand what I had done until a day or two later. It took time for me to process that part of me, again. I was proud of my accomplishment but did not know how really big it was. It would open a world for me I really wasn't sure I wanted to be in. Don't get me wrong. The ability to communicate my wants and needs is great, however, with great abilities comes greater expectations.

A month after I started typing, all new and creative programs emerged. I remember my silly brother Matthew running around my house with a label maker labeling everything. Howie made me look at every word I walked by. Just to tell you how crazy my brother and Howie were, they labeled the toilet and every time I sat down, Howie made me point to the word. It was really crazy but helped me start to audio filter the label with the word.

As the months went by, I started to get new voice output devices that would help me showcase my newfound skill. I started using a device called a Lightwriter that made me feel like I was even more different than everyone else. I got more strange looks than curious looks. After I kept pushing away these devices, Howie looked into getting a computer for me. He found an amazing program called WordQ that had word prediction and also had the feature of text-to-speech so I could have a conversation with anyone in a room or around the corner.

My ability to keep the amount of focus and concentration I needed to type was always a challenge. There were times I would just refuse to type for days and months. I never thought of it as giving up or quitting but more of taking a small break or rest. I know what you're thinking. How would I expresses myself or get my needs met if I couldn't talk. The fact of the matter is I found not talking a challenge, but I think it was also easier in ways. I was able just to run in to the kitchen and grab what I wanted or just point to something and people were so glad I pointed, they would just give it to me.

Carly Fleischmann
From CARLY'S VOICE by Arthur Fleischmann with Carly Fleischmann. Copyright © 2012 by Arthur Fleischmann. Published by Touchstone Books, a division of Simon & Schuster. Reprinted by permission. All rights reserved.

What People are Saying About This

From the Publisher
"Carly's Voice makes it very clear that a non-verbal person with autism has a rich inner life. Typing independently enabled Carly to express wit, explain her sensory problems, and show that a good mind has been freed." —-Temple Grandin

Meet the Author

Arthur Fleischmann is the founder and president of john st. advertising and lives with his wife, Tammy, and their two other children in Toronto, Canada. Visit CarlysVoice.com.

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Carly's Voice: Breaking Through Autism 4.7 out of 5 based on 0 ratings. 36 reviews.
BeckyFS More than 1 year ago
As a reader, I think this book is enlightening and inspiring. I am grateful for Carly opening her life and her struggle for the general public to learn and to witness. As the parent of a child with autism, I found the financial and resource discrepancy between Carly's family and many families in this situation start to grind. The list of advantages quickly left me feeling detached from this family: full-time nanny, upper middle-class home/neighborhood, full-time (and weekend) therapists, summer camps for all the children, attorneys, vacations, and people giving up time and resources in every crisis.) Instead of feeling hopeful, I quit reading at page 223 when a neighbor offers to renovate her house to accommodate Carly living there four days a week. I know it may sound harsh, even envious--it is. But I wanted to hear about a regular family's triumph over autism--I hoped to hear about how we, too, may overcome autism. But without even a fraction of these resources, I am left feeling helpless. My husband and I haven't gone on a date in two years. Friends and family shake their heads and "tsk, tsk" over our situation, but no one offers us three hours A MONTH, let alone home renovations. I'm just not sure who the audience is for this book. Mostly because I don't personally know of any family with these resources. I would just caution other autism parents wanting to read a story about family struggle to be aware of this element to the book. Could Carly have improved enough to communicate if she didn't have 24/7 professional staff for the first 10 years of her life? Could her parents have stayed married if they didn't have four days a week without her home? My intent is not to trash the family. It's great that they were able to give their daughter and family so much. My intent is to say that had I known this part of the story, I doubt I would have purchased this book. It left me feeling depressed about what I can offer my child and hopeless for such a recovery for him.
Anonymous More than 1 year ago
If you have autism, care for someone with autism or just know someone with autism,you need to read this book. This book tells the story of a family struggling with a child with severe autism, and their daughter's amazing development of independent written communication. Through Carly's inciteful and articulate descriptions, we learn why people with autism exhibit the classic autistic behaviors, and we learn that the "experts" are wrong about many of them. Carly is an amazing girl that will give any family struggling with autism the hope and encouragement they need to keep fighting for the therapies and services their children need. Carly's message is strong. Never give up, and never assume a child with autism isn't listening and learning. Every person with autism has an internal voice struggling to be heard.
coralieLT More than 1 year ago
This is an amazing book, whether you know someone with autism or not. It is well written, captivating, and extremely touching. It inspires parents to do everything possible to help their children, to find their "inner voice". Carly is explaining her struggles and gives insight about autism. Plus I can't believe how funny she is! Must read!
LisaRAutismMom More than 1 year ago
This is a phenomenal story, everyone needs to read this book whether affected by autism or not. Arthur does a fantastic job sharing his side from a Father's point of view, gut wrenchingly honest and overflowing with pride. Carly is the voice of autism, she is a gift to all of us parents who are looking for answers on what our children are experiencing and her pursuit to bring autism to the public conversation is something we should all appreciate! I couldn't agree with her more, we have to believe in our children and keep working with them to help their voices be heard, however they manifest themselves. Thank you Arthur and Carly for sharing your story with the world!
CuttinUpMom More than 1 year ago
This is a great read. If you know someone that is Autistic or just want to understand what someone with Autism goes through, this book will open your mind and heart. Thank you Carly and family for sharing your story with us. Carly is a bright young intelligent woman. She has done more to open eyes on Autism than any doctor could ever do. Check out Carly's Facebook page, she will make you laugh.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
HFAgrl More than 1 year ago
I am a big fan of Carly Fleischmann and I felt this book was well written. Although most of the book was written by her father I felt it does a good job representing Carly's perspective. Even though Carly is considered on the opposite end of the spectrum from myself, I felt I could relate to her and feel great sympathy for her. The overall message of this book is just because someone with autism is nonverbal doesn't mean they don't have anything going on their brain or are unintelligent. Five stars for this well written book.
Anonymous More than 1 year ago
Like Carly, it is very difficult to express what this story meant to me as the parent of a child with autism. Empathy and understanding for everyone in the family; appreciation to Carly for helping me to better understand the difficulties my son experiences daily and hope that maybe some day.......
Anonymous More than 1 year ago
Anonymous More than 1 year ago
Twink More than 1 year ago
There have been many fiction books released that feature an autistic protagonist - The Curious Incident of the Dog in the Night Time, Memoirs of an Imaginary Friend and just recently Love Anthony. I've read all three and really enjoyed them. Each author has brought their own 'version' of Autism and Autism spectrum to the written page. But Arthur Fleischmann and his daughter Carly Fleischmann bring more than an imagined protagonist to the written page. Carly's Voice is an absolutely riveting memoir recounted by a father and his autistic daughter. Arthur and his wife Tammy are overjoyed when they give birth to twin daughters. With son Matthew their family is complete. Taryn meets her milestones and thrives.....but, Carly doesn't. Carly is non verbal and severely autistic. What follows is an exhaustive tale of appointments, diagnoses, therapies, frustrations, and more. (Mom Tammy is fighting cancer as well.) I just could not even begin to fathom what the Fleishmanns went through. Arthur and Tammy are tireless advocates; determined to do whatever they can to help their daughter. "Carly has autism. Three short words must suffice to explain a tome of weird behaviours and limitations. It's a shorthand for Carly-is-different-she-acts-in-odd-ways-she-loves-taking-off-her-clothes-especially-if-what-she-is-wearing-has-a-spot-of-water-on-it-she-likes repetitive-motion-like-that-of-a-swing-she doesn't speak. We didn't know what Carly knew and what she was incapable of knowing. She made odd movements and sounds and covered her ears when it was noisy. She cried often. And she never, ever stopped moving. Never." And, in one of those 'what if we hadn't' moments....Carly types...Help Teeth Hurt. Although Carly was able to point to pictures for what she wanted, no one had any idea that she was able to communicate in this fashion. And at last Carly has a voice - she is finally able to 'speak'. But Carly's story doesn't end there - her fight to control her body, her desire to live like any other teenage girl, her family's dedication to helping Carly be the best she can be is an ongoing, uphill battle. And you won't believe the places it's take her....so far. "What keeps us moving forward? Sometimes its just inertia. But we keep sight of Carly's dream to be accepted. She wants to live life fully, accomplish great things, and not be pitied. She just wants to be understood. What else can we do? We get up in the morning when the alarm goes off. And never accept 'no' or maybe." I really couldn't put the book down. I was so humbled and inspired by Carly. As I type this up using all of my fingers, I am struck by the image of Carly labouriously typing one letter at a time with one finger while trying to control her body's spasms. Carly is an inspiration to all, but especially to those who are living with, coping with or touched by autism. For those who haven't got a clue - it's an eye opener. Highly recommended. . "I am an autistic girl but autism doesn't define who I am or how I'm going to live my life." Carly.
Anonymous More than 1 year ago
This book opened my eyes to so much about Autism and how it really affects those suffering with it. A great read! Truly inspirational to those of us living a typical life and taking advantage!
Anonymous More than 1 year ago
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Anonymous More than 1 year ago
Anonymous More than 1 year ago
I have worked with children with Autism, Seizure Disorders, Downs Syndrome, etc... beautiful children. This book was absolutely amazing. It really opened my eyes. I haven't been able to stop thinking about it and have recommended it to everyone I know. I have friends with children with special needs, and I think Carly's story will really hit home and help them in some way. So grateful to have read this. Thank you for her family for sharing this beautiful girl with the world!
LIZARD66 More than 1 year ago
I have to say, first off, that I love this book. It's well-written, allowed me to "see" Carly's struggle and ultimate triumph, and it gave me great insight into life with autism. I am mom to a wonderful young man who was diagnosed at 2 1/2 and is now almost 18. My son is verbally-limited; he has the expressive ability of a child approximately half his age, and it's often difficult for me to determine what he feels and needs. I deeply appreciate all that Carly shares with all of us in regard to what it's like to deal with all that autism does to the mind, senses, and body, and I have sensory issues myself, due to another neurological condition. I also like that Carly's father tells the story from his point of view and shares his concerns and fears as well as excitement as Carly learns to express herself. Fathers are often forgotten, so getting his thoughts is of great value. I said 4 stars because, as someone else pointed out, the family clearly has access to resources so many of us do not. My son is in excellent therapies and doing very well because of them. However, his school has been very uncooperative at challenging him and seeing a future for him, and I believe it has cost him. I also would have liked to have heard more about how the family's dynamic was affected as a whole by Carly's autism. What about when she ruined personal possessions? How do you explain that to a young child? How do you explain differences in discipline? Lastly, her mother fought serious illness more than once in the book. I know my own health issues--not anywhere near as serious, at least at the moment--have had a significant impact on both my kids and their ability to live as kids. I also know my son worries when I'm not well. What was this like for Carly and her siblings? In spite of those two issues, I thoroughly enjoyed the book and learned a great deal from it. I recommend it to anyone looking for a story of hope, courage, and inspiration, especially in dealing with serious disability. You will be greatly inspired and enlightened.
Anonymous More than 1 year ago
As a mother of a child suffering from Autism this book was profoundly personal for me however I believe that Carly, her story, her parents and all who have done for them over the last 16 years are no less than incredible. This book is a must read for ALL, it doesn't matter if autism is a part of your daily life because this story is about much more than autism. If you want to be inspired, if you want to be changed, read Carly's Voice!
Anonymous More than 1 year ago
Anonymous More than 1 year ago
This book is such an honest true to life chronicle of the struggles to do the best for a child with autism. Not only autism but non verbal and unable to let any one know about any of her needs. The amount of effort on everyones part, parents, teachers, aba therapists, psychiatrists, doctors and of course Carly herself is astounding. I learned alot about the struggle of trying to get appropriate education and placement for a child with autism. The honest and open communication that the whole team has with Carly and Carly has with them gives so much hope to all effected with autism.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
Mickjagger1967 More than 1 year ago
I loved the book! It was honestly written and I could really relate to the father. With 1 in 88 children now being diagnosed on the spectrum it is so important for people to understand what autism is also to understand what it is not. I found Carly to have a strong personality and such a dry scence of humor. Her intelligence, desires, and wit really dispel the myths of autism. Carly and her family are an inspiration to me ! Tracey
Cheryl4 More than 1 year ago
Carly's Voice is an amazing story that sheds so much light on the diagnosis of autism both from the individual's perspective and the family's. I thank Carly and her dad for sharing their story with us. I laughed, I cried and most importantly, I was inspired to push harder to help my students find their "inner voice".